hi my name is Jess. Im very new to this i jus signed up for neurotalk. I have a little brother (age 3 as of rite now) who suffered a stroke at 6 weeks old. He was an infant at the time which was why it was very difficult for me and my family to tell. Plus no one in my family has ever suffered a stroke so we didnt expect it. He began crying nonstop continuosly for hrs. we took him to his pediatrician who said it was normal for a baby to cry and to get used to it. So we took him home where he continued crying even more. Next day during the afternoon he began facing one side. We realized he stopped crying but would not turn his face in any direction but was indeed stiff to one side. We panicked and rushed him to the emergency room expecting something as small as a stiff neck or something, anything BUT A STROKE. None other then to hear the neurologists tell us " ur son has just suffered a major stroke by the name MOYA MOYA. He will not be able to eat through his mouth but will be on a ng tube feeding through the nose. He will be on oxygen alot of the time. He will also have vision issues, hearing issues, etc. He said he suffered a stroke that would ordinarily kill a human being but since ur son is so young and he was able to survive. However the stroke damaged 80% of his brain. He may not be able to walk, talk, eat through his mouth, etc. We then did some more research and found out that the hospital my brother was born in new he was born with water near his brain, etc etc. Wen he was born his heart slowed down so he was rushed before my mother could hold him and given oxygen and taken to ICU. The hospital was aware my brother was not ready to be relaesed but let him go. As a result my brother may be deprived of a normal life. We've been told to go for more opinions and find other great neurologists/neurosurgeons that can help us and give us some ideas as to what we should do now. He is now 3yrs old and like i said before, cant walk, talk, eat through his mouth, doesnt see, and hears but the slightest noise make him jump up in fear with a racing heart becuae he does not have an alert nervous system,he does feel wen u tickle the bottom of his foot, nearly crys wen u try to feed him & etc. Im his older sis but not the oldest sis. Im only 17 yrs old.We're a family of 7 children and i seem to not give up because i still believe there is a chance. I've never heard of a situation like my very own but would like advice from someone, who can recommend neurosurgeons and ideas. I also want to know if n e 1 knows anything about stem cell research and where it stands because i know that it may be a cure for strokes, paralysis, brain damage etc. Please if ne 1 can help dont hesitate. If u know ne 1 that has been in a situation please tell me what they did. I do believe my brother will get better but its hard to not lose hope wen u hear so many ppl remind u that it was 80% of his brain that was damaged. I believe in God and miracles and i do think he will be better. My mom crys every nite believing its her fault. Ok thanx now!! looking forward to hear what u guys have to say.

I wish I had the words to make you feel better but I don't. I can however offer you a great big hug.

My best advice is to seek out a lawyer, one who specializes in malpractice suits. This hospital should not get away with what has happened and your brother will require many medical services in the future regardless of which way his condition goes. Your family should not be carrying this burden alone.

My prayers go out to you and your family.

thanx!!I appreciate your advice!

I have never known someone who had a stroke so young. My grandmother did and it was due to steroids. Again, I am so sorry and hope someone comes by to talk with you. That little brother of yours is lucky to have you as his big sister.

The weekends are slow sometimes so by next week you should have more responses. :-)

Hello jess

so sorry about your little brother and all the agony that you and your family are going through.

from what you write, it seems so unfair that the doctor's would not refer their little suffering patient to the correct doctor.

Give your mom a big hug.... I will say a prayer for your brother.

take care

Wow, Jess. What a wonderful family you must have to care for your little brother who is so helpless.

Sandy, I personally know a nurse who gave birth to a baby boy who had a stroke, sometime during delivery, I think. Because she was a nurse, she was allowed to bring him home to care for him. His left side was affected.

His was not anywhere near as devastating as your brother's, Jess. This boy is a teen now, and most people probably wouldn't know he had any impairment.

But your poor little brother, how terribly sad I feel for him. You are obviously a very good and brave sister to seek help and advice.

This is a good community. As a whole we are a very caring bunch and I hope you will gain some comfort here.

I was just wondering, does your brother have a special wheelchair? There are some people at church whose little guy (about 3 yo) just got a wheelchair so they don't have to carry him and his oxygen anymore. Also, he is not able to sit by himself, so he has the safety of the chair, rather than just lying on the floor.

Hugs to you and your family. I think I would look into what Sandy suggested. Seems like there ought to be some compensation for you.

BTW, will you tell us your brother's name?

Dear sweet Jess, I wish I could offer words of wisdom that might help, but unfortunately I can't.

My heart goes out to you and every member of your family. What a terrible thing to have happened to your little brother.

You're a wonderful person for caring like you do, and for trying to seek help the way you are. I can't even start to imagine the emotional pain that you've been through.

Welcome to NeuroTalk Jess. You'll find some wonderful people here, who are extremely good at support and advice. I hope you find both among our memebers.

My little brother's name is Justin. And yes he has a special chair we put him in when he gets speech therapy( as I mentioned he cant talk or eat) and it holds him up pretty well.However its not for anything else other then that or something we put him in when we want to play with him .We put him in it cause it holds him well while we try to get him to make eye contact with us or follow a toy with his eyes or something.ANd the chair helps becuase it holds him up while we do that. Its only for indoors though. The chair is not a wheelchair its more like a high chair with straps to keep him up rite.He also has something called a stander we put him in that keeps him standing. It practically jolds up his ENTIRE body. This is so that he can get used to applying pressure to his feet. Was recommended by his physical therapist. He also has a stroller customly made for him too. As for an actual chair to take him everywhere he doesnt quite have one yet. Hes still a stroller baby but when he becomes a little older maybe 4yrs old or five then most likely he will.
Thanx twinkletoeS. I appreciate it, Hugs rite back atcha.


luvin this community DEFinEtLy!!